By Xanthe Hunt, Leslie Swartz, Mark Carew, and Poul Rohleder, April 2021
Few people relish the prospect of using sexual and reprodutive health services. Such encounters can be a bit awkward at best and – at worst – uncomfortable enough to discourage anyone from doing what’s needed to maintain their health and wellbeing. Buying condoms, asking a doctor about contraceptive options, having infections checked out, discussing bleeding or not bleeding, erections or their absence, are difficult for most people.
This is why sexual and reproductive health services need to be organised with the service user’s emotional comfort in mind. Doctors and nurses, the atmosphere in clinics, and even the physical layout of family planning centres should enable people to move past the cringe and do what’s necessary for their health.
But some prospective service users are deterred from help-seeking, rather than catered for. When service providers have poor attitudes or aren’t familiar with the circumstances of patients, buildings are inaccessible and health facilities ill-equipped, additional barriers to care arise.
People with physical disabilities are one group of people who may face these challenges in taking care of their sexual and reproductive health. People with physical disabilities are not a homogeneous group, and there is huge variety in individuals’ experiences, functioning, histories and needs. We use the term “group” here to refer loosely to individuals with a somewhat shared experience of conditions of the body that make it more difficult to do certain activities and interact with the world around them. Yet, despite this diversity, many people with disabilities share a common experience of difficulty in accessing healthcare services, including services for sexual and reproductive health.
In our recently published book we document some of the experiences people with physical disabilities face when trying to use sexual and reproductive health services in South Africa. We found that some service encounters are intolerably uncomfortable, creating barriers to access. These barriers make it difficult for people with disabilities to realise their right to health, autonomy, and inclusion.
The disability and sexuality study
Between 2015 and 2017, our research group conducted a study on the sexual and productive health of people with disabilities in South Africa.
The study had two arms: the first was a large survey of South Africans without disabilities. We wanted to explore their attitudes towards the sexuality and sexual and reproductive health rights of people with disabilities. The second was a photovoice study (participants were given cameras to document their lives) conducted with people with physical disabilities from the Western Cape. In the survey, we asked 1,723 South Africans without disabilities questions about dating a person with a physical disability. We also asked questions about their perceptions of the sexual and reproductive health rights and needs of people with disabilities.
The results showed that many people without disabilities hold problematic attitudes towards the sexuality of people with physical disabilities. They don’t believe that people with physical disabilities have the same rights and sexual health needs as people without disabilities.
In the second arm of our research, we interviewed 13 people about their personal experiences of sexuality and relationships as a person with a physical disability.
Among the results from this arm of the project were participant accounts of nurses asking them why they had become pregnant when they “were not fit to be parents”.
One woman who uses a wheelchair spoke of trying to get contraceptives at a clinic:
Oh, the nurses were also like, why? What are you doing here? I came for prevention … Why? Do you have a boyfriend? Yes, nurse, I have a boyfriend. No, this is not right.
The attitudes that people with disabilities may encounter when trying to access sexual and reproductive healthcare are hugely deterring. Some of this may relate to health workers’ lack of familiarity with disability issues, and to their own discomfort.
Attitudinal issues are not the only concern. Access – whether people can get what they need – has at least three layers.
- Is there an appropriate service to meet their needs?
- If there is such a service, is it possible to access this service? For instance, is there appropriate transport? Can a wheelchair user, for example, get into the building where the service is offered? Can the user afford the service?
- Are there social or cultural forces which prevent people from accessing services? For instance, do others believe that they don’t have a right to use these services?
One or more of these layers may apply to people with physical disabilities.
In terms of policy and South Africa’s constitution, people with disabilities are entitled to the same access to all healthcare as the rest of the population. This includes sexual and reproductive health services. But as the participants in our research have shown, the reality is quite different. It’s influenced by factors such as the lack of access to transport, buildings that are inaccessible, and an untrained or inexperienced workforce. Policies and theory may at times feel rather hollow.
Dismantling barriers, improving access
Our study of physical disability and sexuality in South Africa showed that rights to sexual and reproductive health for people with physical disabilities are regularly impinged upon.
It also showed that much of this exclusion stems from assumptions about the sexuality of people with physical disabilities, especially among people without disabilities.
Our research, like other studies, clearly shows that there are numerous prejudices about disability and sexual rights. Many people without disabilities believe that people with physical disabilities are asexual, and that it’s a problem if these people engage in sexual activity. As a result, disabled women who are pregnant may be berated for having had sex, for example.
The disabled people with whom we worked closely (and who co-produced our book) tell story after story of feeling excluded and misunderstood with regard to their sexual lives and their decisions to have children. They emphasised the desire to have others recognise that people with disabilities are not different from people without disabilities – they represent a full range of sexual experience and interests. And, importantly, they also represent the full range of human needs for sexual and reproductive health services.
All layers of inaccessibility – from problematic attitudes of healthcare workers to conceptions of disability in society to how buildings are constructed – need to be addressed for people with physical disabilities to realise all their rights.
About the authors
- Xanthe Hunt, Senior Researcher in Global Health, Stellenbosch University;
- Leslie Swartz, Professor, Stellenbosch University;
- Mark Carew, Honorary Research Associate, UCL,
- Poul Rohleder, Senior Lecturer in the Department of Psychosocial and Psychoanalytic Studies, University of Essex